I lost a good friend recently. She was too young, too vibrant, too involved, too full of life to go so soon—just 51. But she died of metastatic disease. She died with hope and dignity and fighting to the end.
This story to those of us in medicine isn’t unique. But why I am writing this letter is to describe some of the good and bad interventions related to her care. She was diagnosed after her initial presentation by her family doctor who explained to her and her husband what he had found. He made an immediate referral to the BC Cancer Agency where her initial oncologist asked her what she wanted and expected from oncology. She was told on this initial visit she could not be cured.
She wasn’t asking for a cure—just someone knowledgeable who would help her fight her illness—someone on her side fighting for and with her. Someone who gave the impression they cared!
She changed cancer treatment centres and oncologists. Her new oncologist was informative and told her he would do everything he could for her, but gave her and her husband realistic expectations.
When the initial chemo failed he went to bat for her, applying through a board of three other oncologists to get approval for another chemo costing $15 000 per month. He kept both her and her husband informed and his door open for any concerns either of them had. He listened. He didn’t presume he knew better than they did what they needed, other than with specific regard to medical treatment.
Right up to the end she was hopeful—she had a cause—to fight, with the help of her oncologist, her family doctor, her husband, her family, her friends—and hopefully to conquer her disease. She had a reason to live, right up to the end.
She was an intelligent woman. She knew the gravity of her situation. But she wanted and needed allies in her fight and hope to go on. To take that from her would leave her without any hope—something we as physicians have no right or reason to do.
The first oncologist was medically correct—there was no cure. But what the patient hears in these circumstances is, “There is no hope, no chance, no reason to try or go on.”
That may have been factual, but it was also cruel. We can have the discussion about getting one’s affairs in order, DNR orders, and so on, pragmatically, as part of the patient’s visits. We can do this without removing all hope.
Is being less than factual in these circumstances giving false hope? Is it wrong to not say in so many words, “No matter what we do you’re going to die?” I don’t think so.
I think hope, any hope, is something we can and should give the patient while we do our best to care, comfort, and, if possible, cure. We’re not gods. In case we haven’t noticed, miracles do happen. Sometimes we’re even wrong. Why not give the patient the benefit of our expertise and some hope so he or she can go on—right up to the end?
—Stephen Shore, MD
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